Tuesday, March 15, 2011

A Confirmed Diagnosis

Last week we received our first biopsy results for Elianna's procedure.

Summary of the doctor notes are as follows: Stomach, small intestine and colon are all completely normal, with some rare eosinophils found in the esophogus. Because of her restricted diet it is impossible to know 100% that she does not have Eosinophilic esophagitis (EE) based on this scope and biopsy. Time will tell as she outgrows FPIES by 2-3 years of age, and as new foods are introduced to see if there are any issues. We are still waiting on the specific biopsy done for sugar intolerance. What this confirms is her diagnosis of FPIES based on the initial results the day of the scope.

Now before you get too excited about this summary, let me say that there are GREAT things here, and some things we have to take a little more cautiously.

First: what we have is a confirmed diagnosis. Elianna most definitely has FPIES, which we already knew, but we were doing the procedure to eliminate any additional complications, additional diagnosis, and look for secondary conditions such as sugar intolerance or villus atrophy. No additional complications were found. GREAT news.

Second: What Elianna has is called Illeal Lymphoid Nodular Hyperplasia and Non-Specific Colitis. The first is characteristic of FPIES, which means inflamed lymph nodes in the colon. The second, colitis, was a lot worse as an infant. This scope and biopsy showed improvement in this. I have no doubt it is due to the introduction of bone broth prior to the procedure. More GREAT news.

***note before continuing: We love our GI, but he is still a doctor, and still human. He provides information for us based on his knowledge and current information on FPIES which is limited for the medical community in its entirety. The FPIES mamas remain the experts, by far, based on experience and being in the trenches. Where was that honorary medical degree, anyway?

There always seems to be something 'lost' between the documented results of a test from the lab, and the interpretation by the doctor. Granted, it is the doctors job to interpret, but it is often directed by the amount of information he/she has, as well as their personal bias. It is like my job as a teacher. I speak and give professional advice based on my experience and knowledge. In no way can I know everything, or see all that the parent sees. With that in mind....

Third: Stomach, small intestine and colon are all completely normal was translated from no definite diagnostic abnormality. It did not say no inflammation, but showed that the colitis was on the mend. GOOD news!

Fourth: Elianna does not show signs of EE at this time based on what she was currently eating. This is GREAT news as we move forward with the broths, and also shows that she may potentially have less issue with her trigger foods in the future if we can enable some intestinal healing. EE is a much more permanent label, which includes scarring and lots of esophageal pain. Though we can not get a complete confirmation that she does not have EE, I was thrilled that there were no signs of scarring, especially with the extensive amount of vomiting and reflux her little body has endured.

Fifth: Still waiting on the test regarding the various types of sugars. This is a highly specific test only done by one lab in the country (as I understand it). Sugar intolerance is primarily a secondary condition when there is much damage and extensive leaky gut syndrome. The body simply can not handle sugars. This has not been a large concern of ours at this point, but I believe that due to my desire to eliminate all other possible complications and our GI's not wanting to have to put her under again, he conducted this test.

Sixth: Outgrowing FPIES. *sigh* This is an FPIES mother's dream. But unfortunately not the reality for most, and is only medical speak for 'we don't know'. Outgrowing something is not a scientific explanation for anything. You can not conduct a research study on it, except to document when symptoms stop. On average, they THINK, it stops around 2 or 3 years of age. But that was based on no research and very few numbers. The medical community is now estimating 1 in every 1,000 children in the U.S. have it. But they don't know, and some doctors estimate there are more. They do not know if it is on the rise or previously undiagnosed.

Many doctor currently studying FPIES believe it is NOT outgrown. The condition can improve, and most likely will, if we can keep them alive long enough and provide treatment that does not do additional damage. But this comment shows that even the best of doctors are limited in what they can provide. This does not depress me or cause me concern, because there are things that can be done if we can just find each individual path. Just take a look at these results - mostly GREAT!


  1. What's the consensus of other FPIES mamas on "outgrowing" it? What do the moms with 10 year olds have to say about that? Glad you're getting some answers! :)

  2. ha...the consensus is we all hold our breath and wait...and those with 10 year olds who are on prescription liquid diets get lots of prayers!


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